Rights to Life

By the end of March, the epidemic had spread to Vietnam, Thailand, Singapore, Germany, the United Kingdom, Canada and the United States. By mid-April, the disease, now known as severe acute respiratory syndrome—SARS—had afflicted people in 19 countries on four continents, killing nearly 800 people.

When Chris Beyrer reviews this now-familiar story of a public health emergency, he sees more than a frightening epidemic. He also sees abuses of human rights, especially the civil rights of Chinese researchers and the world public’s right to information. “Dictatorships hate bad news,” Beyrer says. “They tried to control the information, not the epidemic.”

When he looks at brutal ethnic cleansing by the Burmese military junta in the countryside bordering Thailand, he sees human rights violations, but also a public health crisis. Around the globe, on every continent, Beyrer can enumerate violations of fundamental human rights that in his view also constitute dangers to the public health—dangers that an increasing number of public health specialists are anxious to study and help resolve.

This thinking represents a new human rights/public health paradigm. Beyrer is one of its leading proponents. He is an associate professor of Epidemiology at the Bloomberg School. He is also director of the Fogarty AIDS International Training and Research Program. As if that did not make for a sufficiently crowded business card, he is now director of the Bloomberg School’s new Center for Public Health and Human Rights, funded by the Open Society Institute.

“What has been missing from mainstream human rights [work],” he explains, “has been an understanding of the impact of rights violations on the health of populations.” Investigations of human rights violations typically have been conducted case by case, not at the population level, though whole populations are affected. “What has been missing, in many cases, from public health and epidemiology is an understanding of the role of human rights questions in disease transmission. Human rights workers need public health tools, and public health research needs political analysis.” 

Take the case of eastern Burma. For years the Burmese government has waged a campaign of ethnic cleansing, forced labor and terror against several minorities, including the Karen ethnic group along the frontier with Thailand. The mortality rate for children under 5 years of age on the Burmese side of the border is 10 times the rate in neighboring Thailand. That’s a Burmese public health disaster. But the damage does not stop at the border. Karen farmers, forced from their land into forests, suffer very high rates of infection from malaria and filariasis—diseases once under control in Thailand but now spreading again along the Thai side of the Burmese frontier. Mosquitoes, feeding on infected people, do not respect borders. Malaria in Burma soon means malaria in Thailand.

Beyrer cites another example, this one in the United States: Inmates of many federal prisons cannot obtain condoms. “Prisoners are asking for condoms to protect themselves from forced sexual partnerships. It seems to me, since we know the prison population is the highest HIV population in the U.S., that this is a clear example of the state actually denying people the right to protect themselves.” This, he argues, is a health problem made worse by human rights violations.

Repressive and kleptocratic governments—and sometimes democratic ones—create public health problems. And public health research tools are effective means of studying the consequences of misrule and rights violations. Discrimination against marginalized social groups, suppression or distortion of information, violation of privacy rights, the use of mass rape as a weapon of war, extrajudicial executions, torture, ethnic cleansing—all cause human suffering in ways that scientists like epidemiologists are good at assessing. Those assessments, says Beyrer, can drive political change.

The new human rights center grew out of ground seeded a decade ago at the School. Robert Lawrence, the Edyth Schoenrich Professor of Preventive Medicine at the Bloomberg School and associate dean for Professional Practice and Programs, recalls being approached by MPH students Heather Kuiper and Diana Hammer. They were interested in human rights issues but could find no relevant offerings at the School. They knew that in 1986 Lawrence co-founded Physicians for Human Rights, which uses scientific methodologies to investigate violations of human rights. He has investigated rights cases in El Salvador, Guatemala, Chile, South Africa, Egypt, the former Czechoslovakia, the Philippines and Kosovo. Responding to the graduate students’ request, Lawrence helped organize an informal seminar.

That seminar led, in 1996, to a certificate program in health and human rights that drew on relevant courses already listed in the School’s catalog. Several years later, Ron Brookmeyer, PhD, chair of the Bloomberg School’s Master of Public Health program, asked Lawrence and fellow faculty member Gilbert Burnham, MD, PhD, if they’d create a concentration in refugee health and human rights. They said yes. Since 1997, Beyrer had worked with the Open Society Institute (OSI), a private foundation started by financier George Soros that supports a nexus of organizations in more than 50 countries, campaigning for democracy, rule of law, civil society and respect for minority rights. Beyrer pitched OSI, and when the Institute agreed to provide $86,000, the human rights center was born in April. 

“Health care workers bring specific skills to analysis of human rights problems,” says Lawrence. “For example, how to document, through careful examination and interviewing, whether someone has been tortured or abused. Or forensic determination of causes of death and assessment of abuses through field studies, surveys and other epidemiologic investigations.”

This sort of work augments the traditional case-by-case efforts of organizations like Amnesty International, which investigates and campaigns against torture, political oppression and the death penalty. An internal review some years back revealed the organization’s methodological shortcomings in Guatemala. The review found Amnesty investigators had documented the arrest, torture, murder and disappearance of more than 3,000 individuals during the country’s civil war but had failed to document the deaths of 400,000 Mayan peasants. For the 3,000 individuals, Amnesty International had names, but nobody reported the Mayans on a name-by-name basis, so they never came to the attention of Amnesty. The review offered a valuable lesson: Countrywide human rights campaigns require population-level methodologies.

Epidemiologists and other public health researchers, of course, are trained to work on such a scale. Says Beyrer, “If you think of the rights violations that impact the well-being of entire populations”—ethnic cleansing in Sudan, for example—“those need to be assessed using population-level methods.” (more)

Those assessments, which create volumes of solid data, are more successful in persuading governments to act than appeals on behalf of imprisoned or mistreated individuals. Says Beyrer, “Country A may not care two hoots if the opposition leader in Country B is in prison. But if the political context in Country B leads to epidemic diseases in Country A, that has a much broader impact.”

Burma again provides a case in point. The country has long been recognized as a locus of Southeast Asia’s heroin traffic. Because so much transmission of HIV in the region is by contaminated needles, drug trafficking spreads HIV/AIDS. In Burma’s northern Kachin state, according to the Open Society Institute’s Burma Project, tests have revealed that 90 percent of heroin users are HIV-positive and acquire the disease within weeks of first injecting drugs. Export of heroin means export of HIV/AIDS.

The Burmese government, implicated in the taking of huge profits from collaboration with the drug trade, has always denied that the country is central to the region’s heroin trafficking and its collateral health effects, Beyrer says. Neighboring countries have their own serious drug and HIV problems. But rather than responding to the public health threat out of Burma, nations like China have denied the dimensions of the trafficking as well, for political reasons, says Beyrer. China, for example, has been reluctant to jeopardize lucrative trade in weaponry with the Burmese junta.

Enter public health professionals, wielding not appeals to conscience on behalf of, say, jailed dissidents, but molecular epidemiology. Beyrer explains: “Molecular epidemiology uses epidemiological tools in concert with genetics to document, for example, the movement of influenza strains. When we were trying to understand the spread of HIV in Southeast Asia, we used it to look at subtypes of HIV among heroin injectors in and around Burma, China, Vietnam, Thailand and India. We found viruses from Burma, spreading along the trafficking routes, in other drug users’ blood in India and China, and thus could show, at the genetic level, how the spread of Burmese heroin was driving the spread of HIV in the region.” 

Confronted with the epidemiologists’ data, countries concerned about their own HIV epidemics took notice. China, which had been supplying arms that could be used by the Burmese military to oppress the Karen and cause growing public health crises not only for them but for Thailand, now agreed to a joint U.S.-China intelligence operation on the Burmese border to interdict heroin trafficking. Thailand started working with the U.S. military to interdict traffickers on its border with Burma. Beyrer concedes that neither of these actions is a victory for human rights in Burma. But they represent the power public health data hold in affecting government policy: “You can say to a government that if you keep supporting that dictatorship next door, you’re going to be vulnerable to all these infectious diseases that you thought you’d controlled.

“I can tell you that when you talk to decision makers, they want to see evidence,” Beyrer says. “That’s another thing that epidemiology can do. It gives you something measurable and testable. That’s very important.” He points to the SARS outbreak of 2003. “People saw dramatic evidence that freedom of expression really was a public health issue, because limitations on information let that epidemic get out of control,” he says. 

The late Jonathan Mann is credited with first articulating the human rights dimension of public health problems. Mann, who was killed in the crash of a Swissair flight in 1998, was the first director of the World Health Organization’s Global Program on AIDS and founder of the François-Xavier Bagnoud Center for Health and Human Rights at the Harvard School of Public Health. In 1994, he coauthored a seminal paper titled simply “Health and Human Rights.” In that paper’s conclusion, the authors wrote, “...collaboration with health experts can help give voice to the pervasive and serious impact on health associated with lack of respect for rights and dignity...the importance of health as a pre-condition for the capacity to realize and enjoy human rights and dignity must be appreciated.”

Mann argued that human rights issues allowed the AIDS epidemic to spread quickly yet remain ignored for such a long time. In the United States, the infection was first confined mostly to gay men and IV drug users. Had these groups not been marginalized by prejudice and discrimination, Mann argued, the response to the outbreak of AIDS would have been faster and better resourced.

Lawrence Gostin, JD, professor of Health Policy and Management and director of the Center for Law and the Public’s Health at the Bloomberg School and Georgetown University, was a coauthor of “Health and Human Rights” and with Mann taught what he believes to be the first-ever class on the subject. Says Gostin, “We argued that public health improves human rights, that human rights improves health, and that there is a synergistic relationship between the two. That formula is still crucial today.”

Beyrer believes the Bloomberg School’s center is the first in the nation to examine how human rights violations affect infectious disease outcomes. Much of the center’s initial work will concentrate on the human rights–public health dimensions of HIV/AIDS. The Bloomberg School is uniquely positioned for such a focus. Beyrer notes that it has faculty, students and alumni active in population-level health efforts around the world. Among U.S. institutions, it has the largest portfolio of NIH-supported HIV/AIDS research in developing countries. Its international HIV/AIDS training program is three times larger than any other in the country.

Meshing political advocacy and public health science will mean venturing onto potentially hazardous ground. One problematic area is the possibility of introducing to public health research a degree of advocacy-induced subjectivity and observer bias. Says Lawrence, “Getting caught up in advocacy makes it very tempting to interpret data in the most compelling way for strengthening the advocacy position. Careful documentation of human rights abuses followed by a careful advocacy campaign based on those findings usually helps avoid the pitfalls.”

Lawrence and Beyrer have heard the argument that public health professionals should stick to research and leave advocacy to the advocates. So has Gostin: “There is currently a significant backlash against health and human rights among the conservative community. They claim that human rights illegitimately expands the scope of public health. I believe that we in public health need to do more to show the link between human rights and health outcomes. The field of epidemiology is crucial for doing so.”

Beyrer responds that to not apply epidemiological methods to the study of rights abuses just because that research will have a political dimension is in itself a political position. As he wrote in a précis of the center, “Well-intentioned public health efforts that seek to de-politicize threats to health in coercive and repressive settings risk poor outcomes at best, and worse, the possibility that they may lend support to repressive systems that are at the root of problems they seek to address.”

He cautions that the new paradigm doesn’t imply that human rights abuses are behind every public health problem; rather, the tool can be used in “a very limited and precise way” to powerful effect.

“If you scratch the surface of public health people, they all care about human rights,” Beyrer says. “It’s a field full of compassionate and very smart people. But the tradition has been to leave your politics at the door, to go forward with scientific and technical solutions. But if you leave your politics at the door, and politics are playing a central role in the dynamics of an epidemic, you’re doing incomplete science.”